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Juanita 9th September 2013
Thank you so much for this information. The relief of finally having someone 'get me' and verbalising what I have been silently screaming inside since 1999! To cut a long story short I had basically resigned myself to a life of chronic weakness on one side of my body and all the resulting psychological problems that come with being ill for so long. You have given me a new found sense of worth and I am so grateful. Optimism has not factored large in my life for over a decade. I am so grateful to you. Words cannot express how important this website is to my life. Thank you a thousand times.
Jennifer 24th August 2013
I have found this site pretty useful. I was given the web address when diagnosised May 2013 by movement disorder neurologist. When I explained to my family I gave them the website as well. The unfortunate part about my diagnosis is that this is all I was given. "You have functional movement disorder, here's a website go home and look it up and see a psycologist" Four months later I still have not found a psycologist who has heard of this let alone knows how to help, I did find out however they are ridiculously expensive where I am) Other patients I have connected with over facebook have noted their doctors tend to use them like guinea pigs to learn about the disorder and still have not been helped. The lack of help and lack of understanding and sometimes belief the doctors, psycologists and psychiatrists have I am personally finding to be quite detrimental to my recovery.
Melanie 11th August 2013
hi my name is melanie. Dont know if my condition will help any one but i can understand what some of you are going through. In may 2011 i started having pins needles down my left side and couldnt walk properly on my leg. I could only walk by dragging my leg behind me and had a lot of falls. My gp thought it was a trapped nerve so booked me in for a mri. Over the weeks i got worse and my bladder packed up and my speech went. Then in June i collaped i went into hospitial and had a lot of tests. I came home with a zimmer frame and catheter i had no feeling down my left side and could only get about dragging my leg behind me. I had physio and eventually went from 2 crutches to one. I had to walk with 1 crutch in my right arm as i got dropsy alot with my left hand so had no grip. I carried on like this and eventually was self catheterising and then went back work but in may 2012 had a relapse and got finished from my job. I was diagnosed as haveing hemisennsory syndrome down my left side. I kept having a lot of falls, my speech going funny and couldnt go out on my own. My gp said that because i was putting pressure on my right side to support my left side my right side was getting weak. Then in january this year i collapsed and fell down the stairs and ended up in hospitial and now am in a wheelchair as I have no feeling from waist down and a permanent catheter. At rehab that i went to for physio unfortunately because i get the shakes and dropsy (i call it) i dropped a drink and due to having no feeling i severely burnt my legs. While there i had physio and they were trying to get me to walk with zimmer frame but my legs just dropped to the floor as i have no feeling. I ended up with a badly sprained and bruised ankle due to a fall one day so they discharged me. I've seen a neurologist and been told that ive got hemisensorry syndrome. I am wheelchair bound. I'm sorry its a long essay but just hope it helps and i also get pins needles in my arms hands , thankyou for reading melanie x
Editors comment: Melanies severely disabling symptoms are sadly not that uncommon. Some neurologists use the term 'hemisensory syndrome' to refer to functional hemisensory disturbance. (although clearly Melanie has more than just sensory disturbance)
Jane 27th July 2013
I offer the following account in case it is of use to others, or for the research being undertaken into functional dystonia with foreign accent syndrome:In December 2011 I fell on black ice. I was driven 16 miles to work and back in the morning, then another twelve miles in the afternoon before I was taken to A&E, having struggled with walking, speaking, and recalling how to do simple things like finding, and reading a telephone number, then how to dial. I had a massive headache, but between paracetamol and pain ignoring techniques, I managed. Five days later I tried working again for an hour or two, using a speech I'd prepared previously. This time the journey included an emergency stop and a lot of speed bumps. Next day I was back to the beginning; it felt like my brain was bouncing off the inside of my head; as if it's normally set in jelly but the fall and the journeys had melted the jelly. Ten days after the fall, a CT scan showed all clear. The Dr noticed I was speaking slowly, but let it go. Nearly a month after the fall, I started walking outdoors again, very slowly and with a stick. The cold got into the back of my head like a spider's web. I had an x-ray which showed swollen neck muscles, which explained not only the stiffness of my neck, but the two ridges just below the back of my skull, which everyone thought normal, but I knew was not for me. Over the next months, my speech was not normal unless I was reading aloud. Someone showed me an article about dysphonia. My walking was also stranger when I got tired, which I still was a lot of the time, needing an afternoon rest and going to bed early. In the autumn I seemed to be back to normal, but then one night when I was in a crowded room with everyone talking loudly, I developed a twitch in my neck and it was extremely difficult to get words out of my mouth. I struggled walking back to the car, with heavy feet, etc. The next day I was not much better, and rather scared, so I contacted headway who suggested I go to A&E and get to see a neurologist. There was no neurologist there when I went, and nobody could find anything wrong. My GP wanted to put me on diazapam as a muscle relaxant, which I refused in the light of what it can do to a healthy brain, never mind an injured one.
Later I saw a neurologist who diagnosed functional dystonia and suggested that if there was no improvement I see a speech therapist. The speech therapist diagnosed foreign accent syndrome, and said there was nothing she could do, but we tried me focussing on her saying a word, then trying to say a whole sentence by concentrating hard. This seemed to work, albeit being hard and slow work - and the opposite of the distraction recommended by this website; confusing! Since then, I have been sent for a second opinion to another neurologist, who wants to suggest it may be caused by conversion disorder, so I am awaiting an appointment with a normal psychiatrist. From Headway's advice, I would have expected to be seeing a neuropsychiatrist, as in some of the examples in Feeback 10; retraining my brain makes far more sense, as I have not been at all stressed or upset since I fell except by this disorder and the way some people react to it. If anything I'm more positive than I used to be.
The neurologist told me there are no neuropsychiatrists or neuropsychologists within range of where I live (this is not so), and that the doctor running this website is the only one dealing with the condition in the whole of the UK.I am currently on a long holiday and trying to regain some fitness after eighteen months of resting whenever I was not working - finding excercise which I can take which doesn't jolt my head too much. I am in good health apart from slightly raised cholesterol (which should be helped by the excercise and weight loss). I also take hormones, and calcium, long term. I feel normal when I'm on my own; I speak normally in my head and to myself as well as when reading (and when my head is right back, i.e. looking to the ceiling), but I soon realise I'm not when I try talking to anyone (I strain at words, and then a form of foreign accent syndrome comes out), or when there is a sudden sound, or a noise which my head doesn't like, or an unexpected situation, surprise, or two things to deal with at once (which tend to trigger the neck dystonia spasms). I find that my speech is worse after I've experienced some form of vibration - travel, machines, roadworks, loud music etc. I am trying to avoid these at present (e.g. not travelling far), though whether that's the right thing to do I don't know.
There are other symptoms in common with head injury patients, such as shopping in busy supermarkets being difficult and making symptoms worse, but these seem to be easing off.For my own part, so as long as I'm not with people, I can pretty much forget my symptoms - it's only when I'm in view of people I get embarrassed by them, and therefore frustrated. If I feel relatively comfortable, I may try to say a word again, more like myself, when It has come out with a strong accent.
I tell myself that my brain is sorting itself out, and will eventually get back its connections. Meanwhile, while it's repairing one thing, something has to go, and it's decided I don't use speech enough to need to put energy into that except inbetween that repair and the next one, which is why I speak normally for a few days once in a blue moon. I didn't realise before where the limits of medical knowledge lie - I have a better understanding now.Thank you in particular for the message in the site that these symptoms are not imagined, but biological. Hopefully the psychologist will soon work out for themself that this is indeed the case, and that it's not caused by some trauma I thought I'd dealt with but obviously haven't, but by a head injury.
Breana 25th July 2013
While I am delighted that some people find comfort in this site, I have doubts about some of its content. The misdiagnosis page is weird; Dr Stone does not seem aware of some of the basics of computing, so using this as an analogy is misleading. He refers to hardward and software but does not seem to be aware that most software comes preloaded and users are advised to be very careful about adding other software that is not compatable with their systems. So his analogy here doesn't work. Clearly a doctor can know nothing about computer science and be a good medical scientist - but then a better analogy should be used, to avoid confusion (or expose his apparent ignorance in this respect). The inference here is that patients might have deliberately or accidently 'installed' software that is incompatable and that somehow this has caused a 'malfunction' in their 'system'. People don't do that. The analogy with computing would be more useful if Dr Stone noted that when human 'processing systems' (ie our somatic feedback loops or central nervous systems) suffer some kind of breakdown, the rest of the system compensates to try and support it. Hence we know that humans have brain plasticity and so are able to recover from strokes, accidents and injuries. This 'trading function' process is now used in the design of computing technology, too - replicating how human systems work. Dr Stone's analogy also seems to imply that 'software' can think and feel. It can't - although very clever coders could design software that thinks it can think (!). Human 'software' is mostly 'pre cog' - our 'operating systems' were designed through evolution, not our 'own' thoughts and feelings. These, as we know, are transient and so could hardly cause much in the way of medical problems. Conversely how we think and feel when we are unwell can make a huge difference. But that is not likely to be very positive if we somehow feel we are being told we've installed the wrong kind of 'software'. Dr Stone - I challenge you to !
find a better analogy so that people with even basic knowledge of computing don't get the giggles when reading your site. Once we find one thing we can't take seriously, it is hard to take any of the rest of it seriously either. Maybe you could have a chat to your funders about this - I am sure they can come up with something so that you can focus on medicine. Thanks for the feedback opportunity.
Editor Comment: I publish 99% of all feedback received even if it is largely negative like this comment. I agree that the hardware/software analogy has flaws, particularly since computers do not think, feel or experience free will etc. On the other hand, I think for people who are not computer scientists, including myself, the analogy is useful in that it indicates that the problem relates to a problem in nervous system functioning (including plasticity as mentioned on the site) (ie software), rather than irreversible damage (ie hardware). I meet many patients who have found understanding this difference very helpful in progressing with their own rehabilitation, not just as a "comfort". Im sorry this reader did not find the analogy plausible.
Carol 14th January 2014
hi am carol and i spent about 3 years feeling as i though i was going mad. My foot was turning and my life was hard. I started taking fits and episodes not knowing who was beside me, with child like behavior and feeling dizzy. But most of all i was scared , scared that i didnt know wat was happing to me. Then my doctor sent me to see a different neurologist, at last someone who understood and give me a reason for every thing - a diagnosis - functional/fixed dystonia and disocciative episodes. My foot turned in again and I still take eppisods but between my neurologist, GP and mediction ive started sleeping again and and started trying to get better. - a lot better a bit at a time. I was able to understand thanks for reading my story. If it helps one person i'll be happy, thanks
Jean 13th January 2014
I have seizures daily, sometimes 3 lots a day, I'm pretty out of it after them,I fall quite often, I have drop attacks and balance problems, paralysis and other symptoms simialr to these along with some cognitive symptoms like trouble reading knitting patterns, some speech and vision difficulties. Symptoms change but there are always some there, I still feel that everything is different to the day I had the drop In Asda all that time ago, it's like my world shifted and hasn't gone back the right way. On the positive side I wont give up, I do what I can when I can, I make lampwork beads and jewellery and other crafts and if I can't do something one way, trying another will sometimes work. If I cant walk forwards sometimes turning and walking backwords will work for a short while. I can tell more often when the fits are coming and try to put them off, which I sometimes can for a while)And although some days they knock me out , on other days I can go back to what I was doing after a bit of time. I've seen quite a lot of info and new groups starting (facebook etc) so have been reading about what can help. The website is such a good resource I'm glad you set it up. Thanks
Melody 3rd November 2013
Thank you very much for this website. Have you done any research on the connection between trance like brain states and functional neurological disorders? I have "psychogenic attacks" and dissociative symptoms. At one point, I started a very intense meditation regiment to try and "relax" in hopes the attacks would stop. The myclonic jerks stopped, however the dissociative experiences got worse. I found that I could very easily enter a blissful state while mediating. I experienced improved mood, more energy, and better focus. Unfortunately, throughout the day my brain would sporadicly enter into dissociative states - sometimes feeling super "high" or drugged. I'd begin to slur my speech, sometimes I would be unable to use fine motor skills. My brain seems to be very susecptible to trance states. I stopped meditating, and the random dissociative attacks stopped. I'm wondering if this is the missing link in the research,
Editor note: Thank you for your comments. Your experience is similar to other patients who find that they are more likely to have dissociative (non-epileptic) attacks if they are resting or not focusing on anything. See the advice about attacks on 'Attacks -2'. It seems that people are more likely to dissociate in these situations. This is why intense meditation can sometimes make dissociation worse. However, some patients do find it helpful and can use it to gain better control of their symptoms as well (which you also describe).
Cookie 14th September 2013
Hello. I have read this website over and over and find the information wonderful, however believe I was wrongly diagnosed and sent here. Having had an microvascular decompression in 2009 pain around the wound site is a trigger for severe debilitating pain to the neck. Stabbing sudden pain to the area of the wound and the wound being sunken in and dipped as clearly identified, no examination was given at the time by the Neurologist, due to having triggered the pain on a very long journey into London to be assessed. Background history was not given correctly and facts incorrect by referring Doctor who had already spent two and a half years treating me for Dystonia. To see a Neuro Specialist on Movement Disorders to have completly ignored the level of pain I was in for me, sadenning and showed a total lack of care and professionalism to have then taken me into a room full of students not even able to walk properly at the time, asking questions I was unable to reply to due to the pain, rather surprised at his findings for a 10 minute meeting. Many of the symptoms here are not what I identify to at all. A shame that a physical examination was not done, as it would then have been extremely clear of the issue. I was 2 hours away from medication that would have eased the pain for him to have diagnosed properly. You feel so vulnerable when you cannot communicate when in that much pain. Due to this over four years now of not being diagnosed properly disappointed and back to square one though finally going back to the original surgeon. How I had wished that I could have come here to see and find answers. I so want them. I came here with so much hope and acceptance. How desperate we become to be heard. Hoping others do not ever go through such a day and read so many that are happy and relieved. Bad experience for me. All the best to others.
EDITOR: Some patients with functional disorders are incorrrectly misdiagnosed. Studies suggest this happens in less than 5% of patients. This may seem high but this is how often doctors get it wrong in the other direction -eg they think its epilepsy or multiple sclerosis but it turns out to have been a functional disorder all along. See Misdiagnosis for more information.
Mark 10th September 2013
I'm a behavioral neurologist in practice here in the states, and I was sent a link to your site by a colleague who is a neuropsychologist. I find your website to be very useful, and plan to routinely point my patients with "functional symptoms" or Somatic Symptoms Disorders to this site for more information. Very good job, indeed! I don't anticipate this to be the solution to all aspects of caring for these patients but I hope this will help my patients understand what's going on with them a bit better.